I'm still waiting for my first appt. with the Rheumatologist on December 8th. I have developed some other symptoms that I'm not sure are related or not. But I thought I would run them by all of you. I know that Arthralgias can be an issue. But how does the pain or ache from SjS-related joint symptoms differ from Osteoarthritis symptoms, or other reasons for arthralgias? I just seem to be sooo stiff and achey when I wake up. It sometimes gets better, but it seems to be lasting longer as time goes on. I didn't have this symptom a month ago. I feel like there is some swelling, but it isn't overtly obvious. My feet feel like I'm walking on rocks sometimes and my ankles are so stiff. It hurts when I apply pressure on the bottoms and sides of some of my finger joints. I was diagnosed with spondyloarthropathy years ago, but haven't had problems for many years. I can't remember what exactly it felt like than, other then the stiffness. But perhaps the pain on pressure is at the entheses?
I've also developed some fatigue. I just feel so tired at times, and sometimes feel like I can't get anything done. I still work and it hasn't affected my work yet, but yesterday, I was just so tired and couldn't wait for the day to be over.
I also find myself getting very emotional. I don't feel that I'm necessarily depressed, but rather upset that this is happening to me.
Any ideas? I am on Meloxicam but it doesn't seem to make a difference. However, I haven't NOT taken it either.
Hi! I'll try to answer you, but I think the best answer is that this differs from person to person, and even from joint to joint. My "Sjogren's journey" started with an inflamed hip joint a year and a half ago. In the beginning that pain was really intense, like an acute injury, and I had serious trouble with walking, sitting down/getting up etc because it was so intensely painful, and prolonged sitting made it throb with pain as well. I didn't have problems with any other joints at that time. The pain in this hip can still be quite intense sometimes, but now (after being medicated for a while) it's usually more like a dull type of inflammation pain (kind of the same "type" of pain as when you have for example a small infection in a cut or something, a dull just kind of "always there" type of pain).
I've recently also developed some inflammation in my other hip joint and one SI joint. The pain in these two joints feel different than the persistent inflammation in the first hip joint, and also different from each other. The SI joint pain is like a painful "tugging"/knife stab type of pain when I move, and doesn't hurt at all when I'm not moving. And the hip that has just started hurting is just really stiff, like when you wake up with a stiff neck after sleeping in an uncomfortable position, but also doesn't hurt when I don't use it.
So my conclusion is that the pain can feel different depending on which joint is affected and how inflamed it is. The hip that just feels stiff (and doesn't hurt when I don't use it) is probably less inflamed than the other one (the one that hurts all the time), and the SI joint pain I'm feeling, which like I said is a completely different type of pain than the pain from the hips, I know is the "normal" type of pain from inflammation of that joint in general.
None of my joints hurt when applying pressure, except when the pressure actually causes movement in the joint. I don't have general stiffness problems, and like described, pain is directly related to movement, not waking up stiff and improving throughout the day.
Then there are others who have totally different experiences with joint pain, who describe a more over-all stiffness in their joints, more like what you're describing I guess. My case, with one badly inflamed joint and (until now) no other joints being affected is not the typical case of Sjogren's related joint pain.
Don't know if this was of any help at all, but what I wanted to explain is that I don't think there are any "one fits all" answers regarding the type of joint pain that can come with Sjogren's.
(Also can't comment on how it differs from the pain that comes from osteoarthritis as I'm only 25 and have never experienced that.)
I appreciate you even trying. I think right now, I just try to overthink all this. I am so desperate for answers that I just search and search and ask questions all the time.
Because I'm a nurse, I know how to research my concerns, but I don't think one can really have empathy until they've gone through the same experience. I guess I'm grasping at straws though to ask someone to explain "pain."
I can sometimes get overwhelmed with all that's happening because this I haven't seen the Rheumy yet. But hearing about your journey gives me some compassion. I can at least say I've lived many years pain free, and I' so sorry that you're having to go through this at such a young age.
On a side note, do you have any other auto-immune diseases? I am just curious as to why your SI joint and hips and only one side for awhile. Makes me think of RA or AS.
Thanks for your kind words. I completely understand and relate to the situation you are in, going crazy over the uncertainty, googling like a mad person and analyzing every possible sign from your body. I was exactly the same for a long time, and it's exhausting and overwhelming. As far as I know at this point, I have Sjogren's and only that. I am anti-SSA and SSB positive, as well as ANA and a couple of other markers I think, but I'm HLA-B27 negative and RF was also negative, and MRIs of spine and SI joints were at least fine a year ago, so RA and AS both seem less likely than Sjogren's. I also have a dry mouth, but no eye problems (at least so far). Fatigue was a problem but is now fine (am on Methotrexate and Plaquenil). So I'm not really your typical Sjogren's patient, but Sjogren's is still the one that fits the most. I must admit I won't be shocked if at some point another diagnosis is added, though. But I hope not. Best of luck to you!!
Kadiddle, your question is a very understandable one. I have both SjS and osteoarthritis and it took years to differentiate between the two. Many MRIs, xrays and exams have taken place (I have another MRI this week). We are finding that more of my issues are from osteoarthritis which is mostly, though not exclusively, my spine (literally top to bottom).
I and a friend who also has SjS and osteo both believe there is a connection. It stands to reason that if SjS sucks moisture out of our bodies it might not always discriminate between a disc and a salivary gland.
Two ways my docs and I differentiated between osteo and SjS were swelling and SED rate. When I had and SjS flare about a year or so ago my fingers were so swollen that I could not get rings on. My SED rate was also consistently high when I first became ill (I had swelling then too). I finally had to have a Medrol dose to calm things down.
I have nerve issues, mononeuropathy (carpal tunnel) and polyneuropathy on my left side, which further complicates matters because I also have nerve pain (which is distinguishable from joint pain).
In short, no easy answer even if you try to track symptoms, xrays and MRIs have told the tale.
Hope you find some answers it is very difficult to not know what is ailing you.
My joint aches and pains are from lupus and SJS and have usually been limited to hands, elbows and sometimes knees. I don't have neuropathy or arthritis.
At it's worst, I would describe it as feeling creaky. Like a can of oil, a la the Tin Man from Wizard of Oz, would have helped. Dull constant achiness. I was not able to hold a coffee mug by the handle, and instead used one hand on the bottom and one hand on the side to drink. It became hard to use the computer mouse. I had to keep switching it back and forth from right to left to give each hand a break. They felt like they constantly needed a massage. Shaking them, as if shaking water off, seemed to temporarily help for some reason.
The fatigue made me fall asleep much earlier than usual and wake up later than usual. While at work, I had trouble concentrating. By the time I finished reading a paragraph, I had to go back to the top because I had already forgotten what the beginning said.
Luckily for me, plaquenil worked fast and eliminated all of that within a week or two of starting. Unfortunately, I had to stop taking the med after a few years, but magnesium glycinate and Life Extension super bio curcumin seem to be enough for me now.
I hope your rheumy can figure out what's going on with you a come up with treatment that will alleviate your pain.
You have all been so kind and helpful to share your answers. I am so grateful there is this forum so I can have a soft landing when I get anxious and discouraged. I am not a very patient persons and I want answers NOW! But I really don't have that much longer to wait. You all give me hope that there are treatments that will help and I'm never alone.
On another note, I have areas on my upper back that are completely numb and so are both of my big toes on the inner side. I just always figured it was just old age or pinched nerves somewhere. There is no pain involved and never has been. But...maybe it's related to the other symptoms and I have neuropathy. Who knows. Another question for the Rhuemy.
Hi Kadiddle,
I am new to this forum and have been reading posts related to my symptoms and yours are so close to mine. I have bad neuropathy in my feet, and like you described, patches of numbness on my back and along my spine. What's also weird is that some of those spots are really itchy, too. The pain I have is both shooting and aching, burning sometimes. The ache in my legs and feet is sometimes hard to describe, almost like burning, tingling and heavy. I have frequent headaches and rib pain. I also have severe osteoporosis and have had about 12 fractures 😕.
You post was months ago but I thought I'd reply and share my story, and see what your rheumy had to say. I hope you're on meds now that have helped you. My quality of life right now is not good at all, and I don't see a rheumy until the end of the month. We've had a doctor shortage in this specialty area and I havent had a comprehensive appointment for my Sjogrens in three years, when my symptoms were much milder.
Wishing you a pain free day 🌺
Lily
Hi Lily. I did get in to see the Rheumy and was diagnosed with Sjogrens. I'm on Plaquenil and Evoxac. I have seen some improvement and I'm hoping things will continue to get better, although I know that exacerbations are a real probability.
Let me know how your appt. went. Right now I am frustrated with always being cold. But I see the Rheumy again in about 10 days. Anxious to see her again and get some more information. I have to say my skin issues have really cleared up.much less itching and almost no rash or sores.
Kelli
I have osteoarthritis also. I had never thought of the cause of it before. I am wondering if the discs in spine are affected because the sjogrens is destroying the cells that secrete the fluid that keeps the discs moist.
I have most of my osteo in my fingers and my toes and will have to think of for a while about what causes the joints to enlarge in these joints. It must have something to do with the increase of lymphocytes (inflammation of sjogrens) in the joints.
The pain of these joints can be really miserable and I am always thankful that the pain comes and goes. It is a throbbing pain that is so vivid that I feel like I could almost see it booming and throbbing. Just thinking out loud. Irish